ImproveCareNow Parent_partners


Buzzy: A small tool to help in a big way

Three years ago my son started on Humira in an attempt to get his Ulcerative Colitis into remission. Although it quickly became apparent that Humira was controlling his UC, my husband and I were struggling to successfully administer the drug. Our process consisted of 30 to 40 minutes of negotiation along with bribes and other unsuccessful attempts at minimizing the injection pain. We tried our best to allow our son to have some control over the situation by waiting for him to tell us when he was ready.  In the end, we were just getting frustrated.  That is when we found Buzzy.

 

Buzzy was developed by a physician and pain researcher (www.buzzy4shots.com).  It works on the Gate Control Theory of Pain. Its design confuses the nerves with both temperature and vibration. The theory is that this distracts from the injection pain and interrupts the neural pain pathways. Using Buzzy has reduced our shot time to 2-3 minutes and has greatly reduced the family stress and anxiety associated with this experience. I knew that we needed to make Buzzy accessible to all of our patients who receive injections or infusions to help with injection pain and needle phobia.  With a price tag of $40, our care team recognized that this purchase could be a burden on families already dealing with high medical costs.

 

Our Parent Mentoring Group at Riley Hospital for Children did research using the ICN database to determine the number of our patients that were using injections and infusions as their primary therapy.  We collected data from the infusion nurses and Child Life specialists that had been successfully using Buzzy in the hospital.  Armed with this data and personal experience, we prepared a grant that we submitted to the Women for Riley, a philanthropic group of women that support the Riley Hospital and Foundation.  Our group was then selected to present our grant to the review board.  In late February, we received word that we were awarded the grant to purchase 150 Deluxe Buzzy Kits to distribute to our patients.

 

Over the next year, we will be distributing these kits to this target group of patients and any new patients that start on infusions or injections.  We plan on surveying the recipients to gauge the effectiveness of this device. Our hope is that Buzzy will improve the time spent administering injections, lower family frustration, and reduce the overall pain of the injection. These kids go through so many procedures and experience so much pain with their diseases.  It is wonderful to have a small tool to help in a big way.

 

[Editor’s Note: This story was shared by Liz D - a mom of a three boys.  Her youngest son was diagnosed with Ulcerative Colitis at age 5.  She volunteers her time as a parent representative on the Riley Hospital for Children Parent Mentor Group, where she is an advocate for all families with IBD receiving care at Riley.  A mechanical engineer by trade, Liz has “retired” and loves her role as a full-time wife and mother.  This has also allowed her to pursue her love of all that is artistic and creative.  Over the past 12 years, she has taught both photography and memory preservation classes to both adults and kids.]


My Interview with Melida from the ICN Exchange Team



Melida, can you give us a professional snapshot of who you are?

I have an elevator speech, “My name is Melida, I am passionate about Information and Knowledge Management & Knowledge Creation within research communities.  I believe good data makes all the difference.”  I also have a professional identity:  Melida Busch, MLIS, and Director of Cincinnati Children’s Edward L. Pratt Research Library, of which I am proud. I work with the @ICNExchange team which provides me the pleasure of being connected to the ImproveCareNow community.



What will you be sharing at the Community Conference?
My colleague Sheryl Sheldon and I will be presenting on the use of the ICN Exchange as an empowering tool for all members of ICN to “share seamlessly and steal shamelessly”. The ICN community produces a lot of tools and resources, but until we use them, share them and improve them, they really aren’t very meaningful. We’re hoping to make our break-out session very practical, i.e. “This is how you use the ICN Exchange”, while reminding folks that it’s them and not the tools that make the ICN Exchange powerful. Hence the name for the session:  “You are How Data Becomes Knowledge”…

How does this session/focus pertain to parents?  Or how can parents use the information as part of our mission to help improve care.
Obviously partnering with patients and parents is a key tenant within the ImproveCareNow community. I think increasing both the amount and the diversity of the tools, resources and stories that patients and parents share on the ICN Exchange will have a direct impact on the improvement of care in the treatment of children with chronic IBD throughout the network.

Also, sharing in the commons increases your sphere of influence, not only in the potential number of people reached, but also in the ability of those whom you do not currently know to find your contributions later. You have the ability to make a big difference in your community long term, with what feels like such a small action.



 


Sometimes you don’t know what you’ve got till it’s gone…


The announcement from Daniel McLinden that the ICN Exchange was back up.

 

Recently, the ICN Exchange needed to undergo maintenance unexpectedly for two days. Some people in the ImproveCareNow Network probably noticed it more than others. I know that as someone who has come to rely on it to keep up with what centers are working on and looking at, I was keenly aware of its absence.  So you can imagine how thrilling it was when it came back online!

 

Now that the Exchange is back up and running (and better than ever - with plans and resources in place to prevent such outages in the future!) it occurs to me that even a quick glance at the Exchange clearly shows the richness, diversity, vibrancy—and the multifaceted dynamics of our community.

 

When I glanced at the Exchange today this is what I saw:

 

Children's Hospital of The King's Daughters' DIGMA model demo video from the Spring 2014 Learning SessionImproveCareNow centers, like Children's Hospital of The King's Daughters, jumping in and collaborating with parents, patients, and other centers to make sure that we are all learning together!
Call for clinicians to sign up for a focus group to dicuss what has worked and what hasn't worked when trying to get patients and families involved in QI work at ImproveCareNow centers.

 

Opportunities that highlight how much we really, really want and need to learn from each other so we can collaborate even better!

 

The first ever announcement for a ImproveCareNow Dietician webinar Multidisciplinary partners, like the RD group, are staying connected with each other and getting organized so they can The new online 90 day goals tracker for ImproveCareNow centers to track and monitor their Improvement project goals and progress quarterlytake on projects that will build their visibility and leadership in ImproveCareNow.

 

ImproveCareNow QI teams are becoming even more accountable and transparent in their day-to-day QI work.

 

The Parent Working Group of ImproveCareNow is now setting and working on 90 Day Goals and in the spirit of transparency is sharing them with the whole NetworkParent Partners are setting their 90 day goals, tracking their progress and keeping the Network informed!The Patient Advisory Council request to ImproveCareNow participants to co-produce an Ostomy Toolkit for patients with permenant or temporary ostomies.

 

And finally, amazing patients around the country are teaching us more and more every day.


 

And that is just a quick glance! So thank you to everyone who has been a part of helping us build this vibrant community. I, for one, can’t wait to see where the community goes next!



The ICN Exchange is an internal knowledge-sharing platform that the ImproveCareNow Network uses to communicate, collaborate and innovate across the miles. Clinicians, Researchers, Patients, Families and Improvers are able to log into the ICN Exchange and share seamlessly and steal shamelessly!  The ICN Exchange has enabled ImproveCareNow to extend our “all teach, all learn” collaborative approach to medicine far beyond our monthly webinars and twice-annual Learning Session. It allows us to identify ideas and best practices in pediatric IBD care and introduce them into the care delivery process much faster—improving care for our patients now.


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